15 Lyme Disease Myths Everyone Should Know

May is Lyme Disease Awareness month and the month we always participate in the Lyme Disease Challenge (I will be posting more about it on here later in the month!) Both my son and I have Chronic Lyme Disease. My son actually has PANS due to Lyme disease and 4 years later is still undergoing continued treatment for it. Myself I transmitted it as a child and didn’t find out until almost 15 years of misdiagnosis. So in honor of Lyme Disease awareness month, I wanted to let people know some myths surrounding Lyme Disease and Chronic Lyme Disease!

Not every doctor is Lyme-savvy, so if you think you have Lyme disease, it is important to distinguish fact from fiction in order to treat or prevent Lyme disease or to get the most effective treatment if you do happen to get infected.

Here are some of the most common myths and misconceptions about Lyme, and the true facts…

Myth #1: Lyme Disease is Rare

According to the Centers for Disease Control and Prevention (CDC), Lyme disease is the fastest growing Vector-Borne Disease in the United States. The CDC estimates 329,000 new cases of Lyme disease are diagnosed each year, 10 times more than previously thought. In reality, the number is much higher then what the CDC has reports of, due to misdiagnosis and inaccurate testing!

Myth #2: Lyme Disease is Only an East Coast Problem

In the last ten years, ticks carrying Lyme disease have been reported in all 50 states, with the highest numbers in Connecticut, Rhode Island, Maryland, New Jersey, Massachusetts, New York, New Hampshire, Pennsylvania, Maine, Delaware, Virginia, Vermont, Wisconsin, and Minnesota.

Myth #3: You Can Only Get Lyme Disease in a Wooded Area

You don’t need to be hiking in the woods to contract Lyme disease. Ticks can be found wherever there is grass or vegetation, including your backyard. Though the adult tick’s preferred host is deer, the immature nymph tick, responsible for the majority of cases of Lyme disease in humans, feeds on a wide range of small animals, including mice, birds, and squirrels. In reality, you can get Lyme disease from more than just a tick!

Myth #4: You Can Only Get Lyme Disease in the Summer

The adult stage deer tick actually begins its feeding activity around the first frost, and will latch onto any larger host (cat, dog, or human) whenever the temperature is near or above freezing.

Myth #5: You Will Know if You Have Been Bitten By a Tick

According to the International Lyme and Associated Disease Society (ILADS), fewer than 50% of patients with Lyme disease recall a tick bite. Research from Georgia Southern University revealed only 4% of those infected were aware of a tick bite.

A bite often goes unnoticed due to the painkillers secreted in the tick’s saliva and the tiny size of the nymph tick, which is no bigger than a poppy seed.

Myth #6: Everyone Infected Gets the Telltale Bull’s-Eye Rash

According to the CDC, a rash only occurs in approximately 70-80% of those infected, and even fewer have the classic bull’s-eye rash, erythema migrans (EM). A 2010 study in Maine revealed only 43% of Lyme patients exhibited the bull’s-eye rash.

It is important to note that there are many different types of rashes that can be seen with Lyme disease. These rashes can be mistaken for spider bites or skin infections.

Myth #7: Doctors Agree on How to Diagnosis and Treat Lyme Disease

There is significant controversy regarding Lyme disease. Two medical societies hold widely different views on the disease, making it difficult for patients to receive the medical care they deserve.

One medical society, the International Lyme and Associated Diseases Society (ILADS), regards Lyme disease as often difficult to diagnose and treat. In contrast, the Infectious Diseases Society of America (IDSA), regards Lyme disease as relatively rare and easy to cure. This group also denies the existence of chronic Lyme disease.

If you have symptoms of Lyme disease, it is important you consult a Lyme disease specialist (called a Lyme Literate Medical Doctor or LLMD). Recognize that opinions on how to diagnose and treat Lyme disease vary widely even among LLMDs, so it is worth getting a second or even a third opinion to find the Lyme specialist who best fits your needs.

Myth #8: Traditional Lyme Disease Testing is 100% Accurate

There are many different types (species and strains) of the Borrelia bacteria which may be missed with mainstream testing. Also, Borrelia has the ability to change its physical characteristics which can make it invisible to the immune system, unresponsive to treatment, and undetectable on diagnostic tests.

The current mainstream testing for Lyme disease can miss more than 35% of those infected. Because of the inaccuracy of Lyme testing, a diagnosis should not be based on testing alone. Lyme disease is a clinical diagnosis which should be based on your medical history, symptoms, and exposure to ticks and other Lyme carrying host.

Myth #9: Lyme Disease is Easy to Diagnosis

Similar to its “cousin” Syphilis, Lyme disease is called “The Great Imitator,” because it can mimic many other diseases. Those with Lyme disease can be misdiagnosed with a variety of conditions including Chronic Fatigue Syndrome, Fibromyalgia, autoimmune disease, depression, anxiety, and neuropathy.

In addition to the Lyme bacteria, ticks can carry other bacteria, viruses, and parasites. These separate infections, called co-infections (contracted from the same tick bite), can cause a variety of symptoms, making diagnosis even harder to obtain.

Myth #10: Traditional Antibiotic Treatment Cures Lyme Disease

Persistent or recurrent symptoms of Lyme disease have been reported in up to 40–50% of patients on the typical 2-4 week course of antibiotic treatment.

Lyme disease may linger because of “persister cells,” that manage to survive a short course of antibiotic treatment by going into a dormant state or by masking their presence.

Myth #11: A Tick must be attached for atleast 24-36 hours to transmit lyme

This is a MYTH. Minimum attachment time has never been established. If you’ve been bitten by a Lyme-carrying bug, you’ve been exposed to Lyme disease.

Myth #12 Lyme Disease treatments are covered by Insurance

Since the CDC denies the existence of chronic Lyme, insurance companies are not required to cover costs related to the disease. Patients spend on average $53,000 per year out-of-pocket for tests, doctor visits, pharmaceuticals, and supplements. There are currently tens of thousands of online crowdfunding campaigns started by patients to help cover their exorbitant treatment costs

Click here for Lyme Disease Financial Aid Resources

MYTH #13 ALZHEIMERS IS A GENETIC CONDITION

In his latest studies, Dr. Alan MacDonald has discovered two strains of Lyme Borrelia (miyamotoi and burgdorferi) in each of 5 brain samples from the Harvard Brain Bank. Borrelia DNA was found in all of the Alzheimer’s plaques, perfect spirochetes found in solid brain tissue, and granular bodies in dying nerve cells. His conclusion is that Borrelia causes Alzheimer’s.

MYTH#14 LYME DISEASE CANNOT BE TRANSMITTED FROM MOTHER TO CHILD

THIS IS A MAJOR MYTH!!! Lyme Borrelia have been proven to pass from mother to child both in the womb and through breastmilk.

MYTH #15 TO REMOVE A TICK JUST SMOTHER IT WITH SOMETHING AND IT WILL BACK OUT!

This to me is the most important myth that every person should be aware of, I myself use to smother a tick, burn it or poorly remove them on myself and my children and most likely caused us to get Lyme. The proper way to remove a tick is below. I also recommend this amazing tool below as well, every house should have one on hand ( it is great for pets as well)

Bay Area Lyme Foundation is now offering free tick testing. Ticks carry many different kinds of bacteria, not just the bacteria that causes Lyme disease. With this study, scientists can broaden investigations into tick populations, and compare current distribution and prevalence of pathogens and vectors in different locations.